Got Gluten?

Yes, I do.

Lots, and lots and lots of gluten.
More gluten, in fact, that anyone with Celiac Disease should have.

FOUR weeks worth of gluten doses.

I couldn't believe the size of the insulated bag the study nurse gave me -- filled literally to the brim with individually packaged doses of gluten.  Each dose was individually weighed, wrapped in cling wrap and then placed in a small Ziplock bag.  Every dosing packets is individually labeled with the date it is to be consumed.  There are four large Ziplock freezer bags labeled Week 1, Week 2, Week 3 and Week 4.  Each Ziplock freezer bag contains seven dosing packets.

There was a detailed instruction sheet in the bag labeled Week 1.

The part I found most interesting about the instructions were the ones around how to handle the empty Ziplock baggies.  Each (theoretically empty) dosing packet Ziplock bag is to be stored within the bag for the study week in which it was consumed.  All four (theoretically empty) Ziplock freezer bags are to be returned in the insulated bag I received them in when I return for the Week 4 visit. 

On the advice of the doctor running the study (in response to the symptoms I had the day of the Gluten Challenge), I split up my first home dose.  I took the study drug in the morning after all of my kids were at school.  About ten minutes later, I toasted one of the pieces of bread (in the toaster everyone in the family uses but me -- I have one that is labeled Gluten Free) and buttered it (liberally, it would appear), and then ate it.

I had originally planned to eat the remaining full piece of bread in the afternoon and the last part -- the not-quite-half a slice piece later, but in the afternoon as I was preparing to toast the second full slice of bread, I decided I would prefer to just get the whole dose for the day behind me, so I popped both pieces into the family toaster and ate them.

As I prepared to take the second half of my first home dose, I paused, wondering what to do with the plastic cling wrap that each dose is wrapped in.  Throw it away?  Maybe.  But maybe not.  After hesitating for a minute, I wadded it up and tucked it back inside the bag.

Later in the day, as my girls rummaged through the freezer looking for popsicles behind my four big Ziplock freezer bags of bread, my older daughter paused for a minute to check out one of the bags.

I found myself explaining to my girls that I am required to return the empty dosing packet bags within each Ziplock freezer bag.  My older daughter looked at me incredulously.

Why?

Well, I explained -- I think it has to do with compliance.  They want me to bring back every bag -- those that are empty and if for some reason I am unable to take a dose on a certain day, they want me to bring that back, too.

She gave me a look.

(I knew what she was thinking.)

Just because the bag is empty doesn't mean the gluteny bread within it was consumed.  

She persisted, But Mom -- you don't have to do this, right?  I mean -- if you want to quit, you can at any time, right?

Right.

But I won't.

And she knows that.

I just hope she knows she is the reason why.